Archive for March, 2012

A few months ago, I started interviewing women who elected to have cosmetic surgery. Today KSL.com published my compilation of (a little of) what I learned from them.

I knew it would certainly get people’s attention — as well as opinions and comments. As I’ve read the comments left on the article, I’ve wanted to respond to many of them. Since I can’t really do that there, I’ll take a couple of points here.

My first response is that this article is only a little piece of the story. The previous articles I’ve researched and published are also pieces that contribute to a whole picture, which is still only slowly forming, about what might be a trend of elective surgeries happening in Utah. So as people say, “Well, what about the influence of media?”, for instance, or “What about how men see and treat women (including the huge problem of pornography)?” I say, those are  good points. I’d like to get to those  in future articles or a book or just on this blog.

My second reaction to many commenters is that this issue is more complex than it may seem at first glance. Many either say, “Why worry about what people’s personal choices are? Let them do whatever they want” or “Those women are so vain! They should accept who they are.” It’s easy to just pick one of those two opinions. But in speaking to these individuals, I found myself empathizing and just enjoying our conversations. In addressing the second widely held opinion, for example, I would say, You know, I liked these gals. We’d probably hang out or be in a book club together. We could be sitting in a gym locker room or a mothers lounge or any number of places, commiserating about how giving birth has drastically altered our bodies, how we’re dissatisfied with our soft, squishy bellies or our stretch marks. I get it. I am not happy with how I look, and honestly, I’m having a slightly difficult time coming to terms with what aging is doing to my body.

I didn’t find these women to be shallow, vain, or self-centered in the 30 or 45 minutes I spent talking to each of them. One of them specifically told me how she’s tried very carefully not to wear revealing or tight clothing or act any differently since she had her mommy makeover. She doesn’t want to change how she acts or looks or puts herself across to others. She doesn’t want to become immodest, or, heaven forbid, immoral. She just wants to feel more comfortable in her own skin (now less saggy than it was).

Having spoken with them and empathized, I don’t want them to be seen as some kind of poster children for vain women who care only about their appearance. They’re not all that different from the rest of us who have complained about how we look. The big difference, however, between them and those of us who have merely complained is that they have gone far enough to invest a sizable amount of money in a change and to take the risk of subjecting themselves to surgery, which always carries the possibility of harm. Granted, in the hands of a certified plastic surgeon and with many procedures now “routine,” the risk of death or other serious harm is fairly low, but it is definitely a risk and something one must seriously take into account. This seems particularly of concern when the patient in question is a mother of children still at home, and if she does die on the table, she’d leave them without a mother. These women did consider those issues and still chose their course.

What I’d like to come of all this is a conversation. Our culture in America today encourages women to think of themselves as objects, to look first at how much we weigh, if we jiggle in good or bad ways, if we are sexually attractive, if we still look young and as fresh as we did before giving birth. Our society worships youth, there is no doubt about that. What started as a trend in Hollywood and among the rich and famous has now become commonplace among the masses: to fix any body issues with surgery and other procedures. We are awash in images of perfection, so much so that it’s impossible not to compare ourselves with those images, unreal as they may be.

Let’s look at the factors that contribute to this trend, such as pervasive media influence, our expectations of ourselves, our comparisons with each other, and the way men are socialized to respond to women, to name a few. Let’s admit that though we may not choose to do what some of these women chose to do, that we may have thought how nice it would be to magically look better.

This doesn’t have to be a trend that continues to go the same direction. We can halt the ever-increasing percentages of people who are having cosmetic procedures done. We can change how society looks at women in particular and glorifies a perfect image, male or female, which now means thin bodies and full breasts for women and lean, muscled lines for men. Maybe we can get back to the days when full-bodied women were glorified. Even better, maybe, just maybe, we can progress far enough where there is no ONE ideal, where all kinds of looks are appreciated. Now that sounds perfect.

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Over the years, I’ve come to realize that the doctor-patient relationship is vital to good health. As with any other relationship, it must be built on effective and clear communication, understanding, compassion, and just mutual “liking.”

Unfortunately, it’s hard to find a really satisfying doctor relationship. It’s hard enough to find friends out in the wide world of people, to find someone who just clicks, who is fun and understanding and supportive. When you’re narrowing down the pool of potential medical mates to perhaps 50 people in your town who are qualified and approved by your insurance, then finding that kind of chemistry in that small group is going to be a real challenge. And it’s not as if those 50 potential mates are sitting in one room, giving you an afternoon to interview them and get to know them. They’re holed up in an office somewhere, with crazy schedules, spending 5 minutes with each of their already existing patients, and walled in by receptionists who take messages and aren’t necessarily great conduits for starting relationships or even investigating the possibility.

So I don’t really expect my doctor relationship to be as close and mutually satisfying as a great friendship. But it still must have a few of those qualities for it to be most effective.

Here’s the thing: I know my body best. I’m not a doctor; I don’t have medical training. But I’m not completely ignorant when it comes to medical issues; perhaps that makes me one of those frustrating patients who knows just enough to make me dangerous. Perhaps it’s helpful. At any rate, that’s where I am. I do know that I’ve been in charge of my own medical care for 20-plus years, and I’ve taken all kinds of medications over the years, seen a number of doctors and some specialists, had some tests, and had a LOT of time to ponder on test results or effects of what I’ve taken or tried. I’ve been smack dab in the middle of my own personal lab experiment for all this time. I’ve said for some time now that it’s really unfortunate that I don’t have my own control group. That would make things so much easier. But I’m one person and I’m the control group and the experimental group in one. It doesn’t make for good experimenting. But that’s how it is.

I know these things: over the years, I have come to appreciate that any hormonal changes in my body really reverberate and effect my whole being, emotionally and physically. Female hormone changes can make me irritable or emotional; they can make me tired; they can make me bloated, and they can make all kinds of other waves I don’t even register in my consciousness. I know that I have a mental illness that requires medication, and that is also a very delicate state of being, to get to where medication helps me but doesn’t knock me out or make me feel numb emotionally. I know that if I don’t feel “right,” then I should look into whatever options there are.

Unfortunately, again, since I’m not medically trained, and I don’t have authority to write prescriptions for myself, I need a trained doctor to step in and work with me to find possible problems and possible solutions. We need to be a team. I will respect your training and experience, but I need you to respect that I can feel things in my gut about myself that you can’t. We don’t have a few hours for me to use all the words that it might take to express why I might feel something particular just “in my gut.” I have to figure out how to get it across in about two minutes. And if I can’t do that, then we’re stuck.

I know if I’ve gained weight. You don’t need to point it out. Believe me, I’m all too aware of it. And if you’re a petite woman who runs marathons and doesn’t have a problem with overeating, then I’m going to instantly feel that you won’t understand where I’m coming from, unless you put me at ease otherwise and try not to judge. I eat healthy, mostly, and I exercise every day. I’m doing the best I can. Pointing out I’ve gained 20 pounds and sighing and shaking your head won’t make me feel any more motivated. It will only depress me. Not only that, it will make me dread having to come in and see you. That’s never good. If I dread coming in to your office, then I’ll put it off, and everyone knows that putting off important medical care is bad. Plus, being anxious anticipating what you’re going to say will probably elevate my blood pressure readings while I’m in the office.

If I tell you I’d like to consider some alternate therapies or tests that you don’t usually use, I’d like your support. Sometimes, those require your signatures and authorization. Please don’t refuse because you think these things are a waste of time or money. If I feel that there’s something going on that your regular tests and medicines don’t seem to be addressing, I’d like the opportunity to waste my own time or money. At least I’ll know I’ve tried. I’m not way out there trying really bizarre things. So try to have a little bit of open-mindedness. Yes, I know where you’re coming from. But please understand how frustrating it is to feel “not right” and not have any answers. Rather than making a face and flat-out refusing, you could at least explore more why I’d like to try something else and perhaps find a way within traditional medicine to address that issue. You support my going to an acupuncturist. So let me try a compounding pharmacist, for example. But the second you squeeze up your face into a disapproving look and shake your head and refuse, you’re going to earn my ire (anyone who knows me would know that will just set me off). At least try to make me feel that you’ve heard my concerns and figure out a way to address them your way; at least make me feel that I’m an active partner in my own care. Don’t make me feel judged or condescended to or brushed aside. Work with me so I can feel validated and part of the team.

Listen, I understand that working in health care is tough these days. Doctors especially have huge debts from medical school and have to jump through all kinds of hoops just to get reimbursed halfway reasonable amounts for the work they do. Yeah, it stinks. I appreciate that. My husband works in health care, though he’s not a primary physician. So I’m not completely ignorant. I understand that you need to be true to the science you were taught that was thoroughly researched. But you have to appreciate also that the knowledge we do have is still pretty limited, and that a lot of research that has been done either used men exclusively as the experimental group, or averages have been calculated using the data from a variety of people. We also know that some research ends up being faulty or rushed and has to be reversed later on, with great human costs. Don’t blame me for being just a little bit skeptical sometimes. And simply averaging information gathered from groups of subjects and mathematically deciding that data then should apply exactly to my individual body chemistry and internal workings is not what I’d call the most effective use of scientific inquiry, either.

Most of all, please understand that how I feel is not just physical symptoms, but emotional. It’s all part of one big whole. If I try to take a few minutes to explain or ask for further help or thinking out of the box, please indulge me if you possibly can. If I don’t feel you’re hearing or understanding me, I’ll get more emotional. It’s natural. Don’t blame it on my “being mentally ill” or think immediately that I must need a higher dose of medication for my mental illness. “Normal” people have a wide range of how they express and show emotions, and it’s natural to feel frustrated when we feel we’re not being heard. It’s natural to feel emotional if you don’t feel well physically and there doesn’t seem to be an obvious  reason. Please validate my feelings rather than telling me that I don’t have the right to express them in any way. I work hard to be kind and civil and understanding, but I am not devoid of emotion, and I cannot stay completely poker-faced when I feel frustrated. Don’t write me off. But when you say we may not be a good fit, you know what, you’re right about that. But sometimes we patients don’t have the luxury of finding a great fit. I just have to make do with that little group of doctors in town that my insurance will pay for and who are taking new patients. But if you know another doctor who might be a good fit for me, then by all means, please give me a name.

I would very much like to find a doctor who will be on the same wavelength with me, at least in how I communicate with words and body language and a little show of emotion. I’d like one who maybe even has a little sense of humor or likes to banter a little. Maybe with the way our health care system works today, that might be impossible to ask for both of us. If that’s the case, that’s very sad. And on a political note, if that is the case, then just making our health care system bigger won’t solve the problem. It needs an overhaul; it at least needs tweaking and adjusting. Let’s not just make a really ineffective system bigger so more people can be frustrated. Let’s dig into it and see how to truly make it BETTER.

Thanks for your time, former doctor and potential new doctor. I know you have a tough job to do. Thanks for going to medical school and doing the work you do. I just hope that we as a society can figure out how to do better in matching patients to doctors so this process of finding optimal health can be a little easier.

Sincerely, Cathy

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A visitor the other day asked me, “So, are you a perfectionist?” Ha! I had to chuckle. It’s like asking me if I like chocolate. Or ice cream. Or books.

Uh, yeah. I’m a perfectionist. I’d like to call myself a “recovering perfectionist,” but that would be implying I’d actually improved a bit and stopped some of my perfectionistic ways. Nah, I’m firmly off the wagon.

This moniker is accurate despite the fact that my friend came into my house while I was in the middle of vacuuming my dining room. The chairs were arranged haphazardly along the edge of the living room carpet, and I was wearing a ratty old T-shirt and sweats. My hair was up in a clip and I was, as is typical for a weekday, without any makeup. Luckily, and unusually for a weekday inside my home, I was wearing a bra, and this is only because there were men in my house installing some new windows. My four-year-old was running around doing whatever while I vacuumed, which was the precursor to mopping (which only happens about once a month around here, though I’d like it to be once a week). With the men stomping around upstairs and creating some background noise, plus occupying my driveway with their big truck, my home was the site of some serious action, and I was a little sweaty and rattled. My main goal was to get the house clean and put the preschooler in her room for some quiet time so I could sit down and rediscover my equilibrium.

Mostly, I wouldn’t point to these markers as signs of perfectionism. Perfectionists’ homes are just naturally clean, with outsiders never seeing the behind-the-scenes action (like the best of magic tricks, everything looks amazing with some sleight of hand); female perfectionists always are stylishly dressed with neat coifs and impeccable makeup; their children do not run wild. But I know the truth: cleaning my home is a must because I am a perfectionist. I like clean floors and surfaces. I like them to stay clean. Since people (children and husband included) live here, they do NOT stay clean. I am perpetually frustrated.

I can’t explain away the lack of makeup, the hair always in a clip on the top of my head, or the fact that I ALWAYS wear sweats and old T-shirts at home (or, if I leave the house,  blue jeans and T-shirts without holes). Perhaps that’s the one category in which I just let myself slide because even I have realized I can’t do it all. (Unfortunately, I have yet to realize I can’t even do half of it all, but I keep on trying.)

And people do see me sweat because I go to the gym every day. And I certainly do not wear makeup or have my hair fixed there (although in that case it’s in a ponytail rather than a clip).

But I can’t point to these habits and say, “See? I’m NOT a perfectionist.”

A whole list of qualities and habits shouts loudly that I most certainly AM (this is only a sampling, mind you):

  • I can’t stand having unfinished projects lying around. When I sew, for example, which is maybe once a year, I just get it all done in two days. I may sew four dresses at once, but I will sit at the sewing machine almost nonstop until they are done and I can put away all my materials and the machine back into their appropriate “homes,” out of sight.
  • Look at what I do for a living: copy editing. Can one be more perfectionist than that? The goal is to have an article or manuscript with NO ERRORS. No misspellings, no grammatical blunders, no style mistakes, no factual goofs, no libel. It kills me to look back on a story I’ve edited that still contains an error that I MISSED. That fault on my part will haunt me for days.
  • I’ve already written about my body issues and will continue to do so. Let’s just observe that my glaring imperfections (hello? 40, possibly 50, excess pounds?) do not slip by my eagle eyes. But in the interest of full honesty, I will say that I’m generally content with my hair and my face. I think I have a pretty face with some very fine features (always got compliments on my eyes and smile) and good hair that rarely gives me problems, unless it’s in dire need of washing.

The thing is, I’ve always been like this. My mom says I was born this way. I believe her. My family dynamics and circumstances tended to reinforce that tendency, but it was always there. My first two children didn’t inherit the trait, but my third has. I sympathize with her. She’s always going to excel in school and activities, but she’ll feel tormented when she doesn’t do as well as she’d hoped (it already happens, even with pictures she draws).

No, I’ll never be labeled “laid-back” or “easygoing.” But people like for me to be in charge. I get things done — and well. But it comes with a price. I’m not the friend you want to take to the beach. I won’t sit there quietly and companionably for five days running, the sand tickling my toes and the sun kissing my skin, thinking only about wispy clouds and bright blue skies. I can only sit and do nothing for about two hours. After that, I’ll be grabbing your hand and leading you on a tour somewhere, or hooking up to the Internet to write or edit or search for useful information. No, I’m not a relaxed gal most of the time. Mostly, I’ve come to be OK with that. And I’ll insist on that until stress makes my cortisol hit freakish levels and I have a heart attack. But when I’m gone, you’ll look back on my body of work and say, Look how much she got done. Wow, those articles are completely error-free. She was amazing.

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I’d like to address beauty today from the standpoint of faith. I grew up in a religion that taught me that I am a daughter of God, of infinite worth, that he created me as a spirit daughter and then sent me here to this earth life, mortality, for a time to gain a body and learn faith while not in his presence. I hope to return to him someday. I am now teaching those same truths to my own four daughters, on loan to me from my Heavenly Father.

I have been struck many times by how much we as females are worth, how amazing we are, how much we can do, how strong we are. If we are truly created by God, and he loves us as children, we must be pretty wonderful and worthwhile.

But here’s the kicker: I also believe there is an adversary out there, a fallen spirit son who chose to rebel, and now this evil one is out and about trying to make us all miserable, just like he is. And he is pretty smart and very determined to bring us all down. He’s quite successful at what he does, too, sadly enough.

He knows just how amazing women are. He knows our potential, and he knows what we can do right now. He knows our power, strength, and beauty. So he is working really hard to fool us into believing that we are ugly, weak, unloved, and unimportant, that we don’t deserve all the best that God can give us. And many of us are happy to let his pernicious lies enter our ears and our thoughts and affect how we feel and how we act and live.

I think one of his tools in our society today is sending a constant message that we are not good enough unless we look good. We must have perfect bodies, perfect faces, perfect hair. We must wear the latest fashions covering (or barely covering) our perfect, thin bodies that sport flat abs and finely toned muscles and perky, full bosoms. If we have flabby arms or flat chests or a little bit of fat anywhere on our bodies, we are not good enough, not worthy of love. He whispers to us that we’re not even worthy of our own love.

In our society today, we are constantly steeped in images. Images of women who are impossibly thin, who have no flaws on their figures or skin. Images of women who wear scanty clothes that reveal every square inch of perfection. Those images shout at us from billboards, from magazine covers at the grocery store, from ads that pop up online, from movies and TV shows, from commercials. Even if we don’t watch TV or movies, we can’t avoid the onslaught.

And most of us are allowing the messages from those images to permeate our very beings, down to the very center of who we are. We are allowing those evil, twisted messages from a miserable being to convince us that we aren’t beautiful, that beauty is simply about being a size 2 and having perfect features. We are forgetting who we truly are, what our royal lineage is, and where we are bound.

In my interviews with women who have elected to have cosmetic surgeries, I have been moved by their feelings of insecurity before their surgeries. I don’t condemn them or want them to feel bad because of the message I hope to convey through this blog. I understand. I can’t look in the mirror without feeling, EVERY SINGLE TIME, that my body is ugly and fat, that it’s unacceptable. I used to be thin, and now I feel I’ve failed. I’m weak, I’m a disappointment. I do understand.

But I want to fight back. My purpose in writing this is to try to remind my fellow daughters of God who we are, and what our real worth is. It’s not about how we look. It’s about who we ARE, who we have always been, and who we are meant to be. We’re far from perfect, in looks or behavior or anything, right now. But we’re works in progress, and that’s OK. It’s more than OK. It’s exciting. We have so much ahead of us, and we’re on the path toward greatness.

We can spend a few hours a week at church, being reminded of who we truly are; we can spend half an hour a day praying and reading scripture. Those things are helpful, indeed, and crucial. But when during the rest of our days and weeks we are bombarded with messages telling us we’re not good enough, that we’re ugly and fat, and that our worth is tied up in our looks, then we must fight back. We must remind each other how important we are, how loved we are. We must take a stand against all those negative messages that are completely opposite of what the truth is: that we are truly of divine, infinite worth. We are daughters of God. Let’s do all we can to go out and spread these true, positive messages, to find ways to wallpaper our lives with them, to cover over those untrue messages.

Stand tall! Remember who you really are, and take the time every day to remind the women and girls in your life who they are, and just how precious and beautiful they are. We can make a difference.

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Early last month, I saw this lovely post linked from a friend’s Facebook page. It got me thinking about my situation, and I decided it would be useful to start a blog that talked openly about mental illness. So here we are, about six weeks later.

Being Sunday, I will focus today on some faith-related observations. I don’t necessarily intend this blog to be focused entirely around faith and my religion in particular, but from time to time I’d very much like to address belief because it is very important to me and how I experience life.

I am of the opinion that my church, the Church of Jesus Christ of Latter-day Saints, has done a nice job bringing some of these more sensitive topics to the attention of the church membership worldwide. The official magazine of our church is called the Ensign, and it comes to homes monthly with lots of wonderful inspiring articles and first-person experiences of how the gospel of Jesus Christ has changed people’s lives. The magazine has featured over the past decade more and more articles that address special situations like how to parent and teach people with disabilities, for instance, and how to tackle the problem of pornography. It has featured articles about mental illness, as well, from the viewpoints of licensed therapists and from those who have struggled with it personally.

So in no way do I think our church has tried to sweep the issue under the rug or act as if it isn’t a challenge to many people. I have definitely enjoyed the articles about mental illness in the official magazine, and I have appreciated books that have been published about the topic that are aimed at the LDS audience.

But I do think that more can be said, more can be done to bring what was once rather a taboo topic out into the open. I’ve already written about how more people seem to understand physical illness, and I liked how this blogger mentioned the same feeling. Our church women are known for providing meals to those who are sick or who have just had babies. We’re great at delivering casseroles. But while I have been given some meals over the years postpartum, I haven’t been provided much sustenance when it’s come to my mental recoveries. I think that there are basically two reasons for that: 1) few people even know when someone’s suffering from mental illness (in general or a bad episode of it) and 2) our society as a whole still just doesn’t talk about it enough so that it’s something people all feel comfortable with. Sure, not everyone is even good about talking about physical illness, shying away from the “C” word, for example, but even so, I think that the more a topic is addressed, the more people can become comfortable with it and the less it will feel like a taboo.

So here I am, again writing these words out in public so they can feel less strange, less taboo, less “other,” less misunderstood. The topic of mental illness is extremely personal to me, and I could continue being very private about how it’s affected me, or I could do what I’m doing now: just speaking out loud. I think this whole blog has that same purpose: to contribute to a conversation, to raise awareness, to increase sensitivity and understanding. I think that in our day we have been blessed with the gift of technology, and if we use it to improve and uplift people’s lives, we will be giving a gift to others.

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I must have a tendency to brace myself mentally for certain outcomes. When I was preparing to enter college, I had just graduated high school as valedictorian, with stellar grades and test scores and lots of admiration-worthy activities and awards on my university applications. Even so, I already knew that I would no longer be top dog when I got to school, so I kind of worked to switch over my mindset and expectations from being the big fish in a little pond to just an average fish in a very large pond. It worked, apparently; I didn’t feel a need to be top of the class anymore, and I found I was generally comfortable not having that pressure any longer. I finished up college with about a 3.5 GPA and was pleased with that. I did a few activities and extracurriculars and largely made sure to take plenty of time to have fun and enjoy my time at Brigham Young University, in part because I’d been dreaming of going there my whole life and probably in part because I’d not been able to relax and have fun in high school.

Going into parenting, I think I also steeled myself to NOT have certain expectations. I especially did not want to expect my children to look like me or act like me or have the same interests. (Perhaps my husband is going to snicker at this statement, considering how I spend so much time reading with them, but in my heart of hearts I believe it’s true.) I didn’t want them to feel pressure to be a certain way or to live up to expectations that were not their own dreams and interests.

Having said that, I am now finding myself mildly shocked when I find out that they are doing things I did or expressing interests in some things I was interested in long ago but no longer do much with. This morning gave me two opportunities to reflect on my own earlier years.

One is something odd and not even an interest, just a somewhat strange behavior. My oldest was leaving early this morning to go on a long-weekend trip with her high school band. I didn’t really plan to wake up to see her off, but since I did end up opening my eyes at 5:30 a.m., I drifted downstairs to hug my girl and bid her adieu for a few days during which I know I’ll heartily miss her presence. She was making herself some eggs, as she frequently does (a trait she did not get from me; I rarely ate breakfast foods for my morning meal growing up: I preferred leftovers), and she told me, “It was the strangest thing. I started cooking these eggs last night at 12:20. I thought it was 5:20, so I got up and started getting ready. Then I looked at the clock and realized it was only 12:20. I don’t know if I was sleepwalking or what, but it was weird. This morning I wondered if it had been a dream, but I opened the fridge and saw the eggs, and I knew it was real!” I said, “Did I ever tell you I used to do that same thing?” No. “Well, when I was a freshman, I woke up and did that same thing a few times; I would start getting ready, then eventually look at the clock and it would register in my brain that it was only 3 a.m. and I’d go back to bed. One time I washed my hair before realizing, and since I didn’t have a blow dryer and it was the middle of the night, I tried desperately to get it to dry by lying over the heating vent.” I told her that after a few times of that happening, I started to take a moment when I first woke up to REALLY look at the clock to make sure I noticed the real time. Eventually I stopped doing that.

It was just an odd feeling to have my daughter experience the same strange phenomenon.

Later this morning, at a more reasonable hour of the day, I trooped off to the county office of education building to watch a large group of elementary school students gather to participate in the “Poetry and Prose” performances. It wasn’t a competition, but it felt a bit like one; the children were all put into small groups and sent off to rooms with judges who gave them feedback on their recitations of poems. My fourth-grader decided a few months back that she’d like to be involved, so she’s been working on a poem (Shel Silverstein, of course) to perform. (Unfortunately, I have not been as involved as I would have liked, with everything else I’ve had going on; it’s right up my alley, and I could have been helpful to her. This I regret.) Sitting in that room watching her and about 10 other students perform their poems was eerily deja-vu for me. For four years in high school, I participated in the speech team, going to competitions around the state giving speeches and performing snippets of plays either individually or with a partner. What was unnerving was seeing all the same theatrical affectations I used to sit and watch in one classroom after another, four years in a row, for most weekends from October to March. These kids were younger, but it was the same stuff: unnatural, exaggerated gestures that had been taught them and rehearsed and affected speech rhythms that sound somehow “professional.” Some of the kids were genuinely, naturally talented, and it was fun to watch them. But even some of those kids had been coached too much so they were just a bit unnatural. The judge ate it up. And that reaction just got to me like fingernails on a chalkboard. I hadn’t felt that feeling in 20-plus years and it came back to me in a flash: that annoyance at watching those kinds of too-rehearsed performances. Sure, anything like that has to be practiced over and over to be good, but a really, really talented actor or performer makes it look natural, as if they never thought about what they were doing or how they would be moving or saying things. And here these adults are turning these impressionable young kids into unnatural performers. Argggggghhhh. I honestly wanted to run away screaming and never look back.

But this same daughter has just this week told me she’d love to get into acting, and she confessed a few days ago, “I want to be a STAR.” So if she wants that, I’ll help her. But we’re going to stay away from the people who would introduce the far-too-exaggerated stuff into her repertoire. I think it’s time to start looking forward to next year and talking about how to make things entertaining but natural.

At any rate, it’s not just the fact that my girls have now, against all expectations, done things I’ve done; what’s interesting are my reactions. I was amused and surprised by my oldest’s nocturnal preparations, and at my 9-year-old’s activity I was just viscerally kicked in the gut by memories of how I felt at speech competitions. It’s amazing how memories can be so strong, the emotions attached so vivid, after being buried for decades.

I suppose I shouldn’t be too surprised; after all, a decade ago, I did write a whole book about how my little girl was reminding me of moments from my childhood. How life comes full circle still astonishes me, though, and it will again and again while I live it.

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In honor of World Down Syndrome Day, I’ve decided to post in honor of my own special child, Marissa, who’s 13 1/2. I’ve written a bit about her already, but this post is specifically about my fun little kid.

Fourteen years ago, I found out I would be giving birth to a child with Down syndrome. I felt very blessed to know ahead of time that my baby had this extra chromosome. I’m the type of person who likes to be prepared, so it was nice to have half of my pregnancy to learn more about Down’s and just be ready to have a child with a disability. For me, what made it particularly nice was that her birthday was like any other baby’s birth: a day of joy and welcoming, with lots of photos, phone calls, snuggling with the new little one. If we had been surprised by her extra chromosome that day, I am sure a hush would have fallen over the room and there would have been feelings and reactions other than just pure joy and excitement over a new addition.

Marissa was the sweetest, most content baby I’ve had. She was happy to sit in a car seat or bouncy seat and just sleep or lie awake and watch me and smile back at me. She is still a very happy girl, no matter what. She has moments of frustration or anger or sadness, but they’re so fleeting it’s almost as if they never happened.

We’ve been very blessed that Marissa hasn’t had any health problems, no heart surgeries or anything that we’ve had to monitor. Over the years, she’s had a variety of therapies and extra services through early intervention programs and the school system, and she’s done really well. In fact, for a long time I could practically forget there was anything “different” about her. She walked right before she turned 2, and she has always talked fairly well and mostly clearly. She loves to read and does a great job sounding out new words. She just seems unbelievably bright to me and to others.

It’s now that she’s a teenager that I am more often reminded that she isn’t really in the same peer group as kids her age. She’s always been very small for her age, and the older she gets and the taller and more developed everyone around her gets, the more that distinction is pronounced. She is the size of an 8-year-old and behaves much like a 6- or 7-year-old, really. For a long time, she’s been quite happy playing with her younger sister who’s 4 years her junior; now she seems to be just as content to play with our youngest, who’s almost 5.

She was strictly in a regular classroom at school for some years, up until about 4th grade, when it seemed a better strategy to put her in a class with other students who had some learning disabilities of various kinds. She still gets to interact with her peers in p.e. or in art or computer classes now, but she has a better opportunity to have learning tailored to her needs in a special class. And I’m happy with that, mainly because she gets plenty of attention and seems quite happy with her class.

Marissa is eager to help and do nice things for others and she loves to hug. That actually can become a small problem sometimes because she’ll hug anyone, even someone she’s never met, and we have to keep reminding her not to do that.

At this stage of raising her, I’m honestly most concerned with her biological changes; she’s slowly starting to grow into a womanly shape (even though she’s still really tiny height-wise), and that means she’ll soon be experiencing other womanly changes I’m not sure how to address or warn her about as I did with my oldest. It’s all kind of a trial and error situation, raising her, but that can be said for any kid, I suppose!

There are tons of resources available out there now for parents of children with any disability, and there are many wonderful places to find information and support if you have a child with Down syndrome. The difference between what’s out there now and what was available just 14 years ago boggles my mind. The internet was barely around when she was born, with not nearly as much information as it has now, and my city library was where I turned for some information when I had my amniocentesis. I found a book that had a little useful stuff, but I think I was just looking for some photos of cute kids, and then I didn’t really find any. Now, there are some wonderful sites and resources that feature gorgeous photos of beautiful children and youths with Down’s, and it does my heart good. This organization, Band of Angels, apparently was around in 1998, but it wasn’t as easily found as it is now, and it just has beautiful photos. When I meet someone with a new baby who has Down syndrome, I either buy one of their products to send or tell the parent about it. It’s just reassuring to see other kids with Down’s given the adorable-photo-shoot treatment. I found it comforting, at least, when I learned about it.

In the first months of her life, I was actually given some books and tons of pamphlets and packets of information about Down’s and different resources available and services and ideas of things I could do to give her a stimulating environment and help her develop. Honestly, I barely read any of them. All that information is simply too overwhelming. When you’re just trying in those early days to get some sleep when you have a baby waking up at night for feedings and diaper changes, that’s the last thing you have energy for: reading and researching. And then as she grew, we had some good support systems referred to us, so I didn’t feel the need to go searching for a lot more.

I think it’s that way parenting any child. There’s always more you can do for them, but never enough time and energy. So you just do the best you can to make their life happy, fulfilled and enriched. Now, I just hope and plan for her to have opportunities as she finishes up with the school system to be able to live semi-independently and have some kind of work and a good support system and network of friends. I want her to have a happy life, just as I want for my other three daughters. And she seems well on her way. Marissa is one happy teen.

Happy world Down syndrome day.

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